“I have already settled it for myself so flattery and criticism go down the same drain and I am quite free.” ~Georgia O’Keefe
Just so you know, if you’re reading this, I love you. Thank you for wanting to check in with long winded antics to health misdiagnoses and Elvis, and if you aren’t here for Lyme talk then you should stop reading now.
I was surprised to learn how often my Lyme has been inquired about. Of course, I never mind answering notes (when the comments I don’t post are turned on) but I’ve heard through the grapevine and emails how many have really made effort to find the actual state of my Lyme disease. 2020 is a good time to address that because there are things I would have shared when I started this blog that I wouldn’t now, on a public forum.
I still might do it one day or we can just talk in person.
There’s nothing to be embarrassed about to be sick of course, unless if you are a visual writer/speaker and you don’t want a reset or relive any of it again.
The article attached above details the closest on a wrap up to Lyme disease, in my opinion. My husband and daughter both said it reminded them of me. The only thing I personally found not true is the average hospital will most certainly not go by your symptoms to diagnose you with Lyme. Again, if it’s not freshly infected in you, it’s called an invisible illness for a reason.
Although asking what my Lyme is like is too broad of a request to begin answering you properly only in a blog. Since this began I wanted to write a book regarding all of the shocking things that happened to me but I changed my mind. Living with chronic Lyme means you, one, myself will have it until death, and carry heart issues you never had before. I’m known to hold on to things but even I know when to come to a final rest.
We all carry battle scars. My 20 years so far of a Lyme infection, neck/throat cancer, repairing my fractured pelvis from a car wreck, being misdiagnosed by 2 neurologists, and being treated for things I don’t need and thanks to cancer, early menopause has all changed me in a way that once you know you can’t go back mode. I’m not hardened, but disappointed in what the medical community can really handle and awakened to a steady awareness of listening to my body. Some days I’m so sick I can be bedridden but luckily that’s been a long time since I take all the precautions seriously. I simply kept ice on my head when a migraine started, chamomile tea with me constantly to keep my heart calm, and regularly took part in a colloidal silver cure, supply oxygen to my body, and work hard to not touch sugar so I can fight back with Lyme in my blood and how it can ravage ones organs.
Regardless of what I share with you, it won’t help you dramatically other than a familiar shoulder and the fact I will more than likely know how you feel, but our sicknesses with Lyme will always be unique individual cases. I was on doxycycline and amoxicillin for 2 years that was too late or not long enough. Who really knows?
The closest thing to MS is Lyme, the closest thing to dementia in the brain is Lyme, the average person knows nothing about Lyme. I found out the hard way, and I highly doubt you would be here if you didn’t as well. Nevertheless, I will never regret what I have endured and you shouldn’t either. Juxtapositions with epiphanies to Lyme and or brain lesions is the reason we are stronger today. Think of daily obstacles to improve cognitive function.
I was never told if my 7 brain lesions and large black brain actual hole is from Lyme or cancer but all of my medical research and brain MRI images in hand, I can guarantee my brain damage is Lyme related. There is astronomical doubt it could be cancer after personal discussions with a reputable oncologist in NY, along with the fact it lacks evidence and documentation to it being due to my throat cancer.
Plus I’m telling ya from long lived experience the average doctor may put on the ultimate poker face but they don’t have the slightest idea what to do with chronic Lyme. They need your tick in a bag and you tell them with your fresh bite to get high doses of antibiotics or blood transfusions. The latter is the only way to cure Lyme. Most hospitals don’t use the proper lab that’s needed to even get your blood read right! That’s the catch, you have to get diagnosed early. Back when my neurologist was filling me with steroid shots for MS and advising me to get my daughter closer to family, I sent my blood to the most reputable Lyme lab, Igenex.
Most doctors will offer antidepressants and some states carry one Lyme doctor many miles away. Regardless, what you do is you don’t give up. You’re fighting for your right to feel well and to get your body clean from parasites as soon as possible to stop the rapid shortening on your life. Holistic health is successful for many reasons. One being you simply don’t have a choice. Holistic health will consistently encourage you to ditch the side effect meds and get your body back to green and clean. I can personally vouch for the success.
Masking physical pain will only cause the Lyme in your blood to have periodic awakening attacks, so will sugar, Lyme loves sugar. I was infected 20 years ago and I’ve endured every painful obstacle Lyme will place before you; make you bedridden, shallow breathing, rapid heart rate while standing/sitting still (I really hate that one), your body temp will rise so high you will place yourself in a tub of ice, your temper will worsen so you must stay mindful to it, your skin will develop small blood like drops on limbs that doctors will never admit is Lyme, your head will pound so painfully you will swear you are about to have a brain aneurism. (I always used an ice roller/pack on my head).
Once in comparison, Lyme disease has the brain damage evidence along with western medicine baffled on how to help a person with chronic Lyme. I have found they choose the cowardly path and blame it on something that you don’t have or that they can’t prove while encouraging medications. I know they’re simply pushing what they are taught or their ego is doing the pushing, but I have found without your helping yourself the repair and recovery will take longer than necessary.
The bone and joint pain, pins and needles, depression, anxiety, or going days without eating. I’ve always been horrible with eating although Lyme in my blood made me go to bed many nights not having the memory if I ate or not.
I never take any credit for a doctor to learn I don’t have a thyroid at all and I’m not overweight, I walk around daily hearing my parents’, husbands’, and daughters’ words that I would kill my self with how I eat. Guess what, if you’re like that too, Lyme makes it worse. You’ll crave sugar endlessly while knowing with Lyme in your blood if you eat it your heart will skyrocket to levels where you need the ER. I’ve been there. They shot me up with morphine 3 separate ER visits until I asked them what was in the IV and to not do it again. *Yes, it felt great but I can get addicted easily if I like something.*
In WV, as my house sat around railroad ties and deer regularly hung out in my yard, this tick gave me Lyme in Lord knows where, when I was 31 years old. I have an abundance of paperwork with the blood diagnosis and tests of my brain to speak for it but not one physician helped me recover when it came to the underrated disease until I met a Lyme disease doctor. Sadly he was blunt that high dose antibiotics are too late for a chronic condition. *Swami S Chandra MD 701 N Hermitage Rd # 7, Hermitage, PA 16148
After having 2 neurologists swear to MS and 2 Lyme doctors swear to Lyme, as cancerous tumors was found on my trachea with cancer throughout my neck, I didn’t believe much from western medicine.
There are many reasons to the rare but negative thinking I carry for western medicine. I remember once after the cancer ate my thyroid, telling my endocrinologist he wasn’t aware my thyroid replacement medicine should be taken twice a day, not once. (Armour thyroid). The look on his face to the indignities for him and his title was beyond insulting, as I was crawling up his steps to his office, that wasn’t enough evidence. I did the work to help myself, and he inevitably found out how to prescribe it. Now I feel the best I ever have and blessed to have more good day’s than sick ones with all my health challenges. Yadda Yadda, this shouldnt gone on this long for any of us.
That’s very scary to me. I know doctors are like every other human in the world, some being great while some need work, but I’m not educated like my daughter, I only have an associates degree. All of my studies was my desire to learn. However that endocrinologist went to med school. Frightening. Another reason to my viewpoint of feeling burnt out with searching for cures, my doctors assistant told me she could tell I was sick for a long time, when I asked why? “Because people who were sick for a long time will do anything to get out of a doctor appointment”.
The good days I live are without a doubt from me not giving up on myself. The fact I have been a rebel all of my life ended up helping me where it counts the most. To feel as I do today took my daily efforts with dietary rules and colloidal silver and hydrogen peroxide baths to kill one strain and become dormant. The colloidal silver detoxing is what caused the biggest of a difference from the pins and needles in limbs. Unfortunately, migraines are a side effect of brain lesions and menopause. I deal with those daily.
Personally, I’ve found out since that first week of being infected and subjected to violent vomiting, high body temps, the flu that doesn’t end, sleepless nights, and stabbing brain pain, that if you go to a college hospital a 25-year-old ‘new’ doctor will explain the theory of anxiety to you. I remember pointing at my bullseye rash directly on my leg to her asking if there could be a connection. Not one to carry blind faith, I was sent home with my first bottle of anxiety meds, and my chronic illness began without me knowing.
I definitely have no private side left after two diseases were blatantly missed with my esophageal cancer and Lyme disease. I was treated for multiple sclerosis, a disease I never had. So that’s another common statement a person with Lyme will state, “I was first misdiagnosed, it took years and partly my own efforts”. (*It’s time to give yourself some credit.
After 20 years of experience I can rest my hand on a bible that I only know people cured of Lyme disease due to it being treated in early stages of the disease, or they find out they didn’t have Lyme.
You all know mine was discovered in bloodwork from a reputable lab to my carrying 7 strains. After years of nonstop effort I walk away with film to my brain damage, a diagnosis as chronic Lyme, and now at a lesser strain.
Presently, I wouldn’t know how to help since I also walked away from treating Lyme. I am mindful to all my rules. There is no Lyme specialist near me although I do have an internist in which she supplies low dose naltrexone as a precursor to more Lyme attacks. I take 3.5 mg of LDN every night. *(LDN is not FDA approved for Lyme, state your case when you meet a dr you’re comfortable with).
My symptoms fluctuated amongst a plethora of annoying nightmares all to taking me down for the count on occasion to make me bedridden. One thing I always had done naturally, my get up and go was stolen.
I always mention these long time spans of illness because that’s a part of misdiagnoses and trusting any doctor you are provided, it will go on as long as you allow it.
Not awesome to be gaslit by western doctors who don’t want to admit the fact that insurance companies won’t let them treat Lyme after it’s chronic, the insincerity was sincere. Meanwhile they try to convince the patients they must have rheumatoid arthritis, fibromyalgia, MS, anxiety, or simple stress from motherhood. By the way, that last one is an insult.
Wishing you only good news to the lyme sufferers.
Doing something over and over and expecting a different result is the definition of insanity, unless if a lyme infected tick bit you.
~Comments are not published to protect privacy, will respond to any questions.~